OIFE’s 5th Topical Meeting “Balancing Life with OI” took place in Stockholm, Sweden, in June 2023. The main topic of this international conference was pain in OI and its impact for instance on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. Here are some impressions from participants: Alessandra Tolaccia My name is…
By Dr. Lars Folkestad, OIFE Medical Advisory Board Every year the OI Foundation (OIF) host a Scientific Meeting where researchers and clinicians from North America is invited for a 2-and-a-half-day long seminar focused on OI research. Lars Folkestad, member of OIFE’s Medical Advisory Board, joined the meeting in April and reports about it. Collaboration…
Written by Lars Romundstad, OIFE volunteer from Norway EURORDIS is the umbrella association for organizations for rare conditions in Europe. And the 26th and 27th of May 2023, OIFE was represented at the EURORDIS Membership Meeting in Stockholm. Lars Romundstad, represented the OIFE together with Rebecca Tvedt Skarberg, who is also a Board member of…
OIFE’s 5th Topical Meeting “Balancing Life with OI” will take place in Stockholm, Sweden, from June 9-10 2023. The main topic of this international conference is pain in OI and its impact on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. The scope will also cover other rare bone conditions. Anyone interested in the…
The OIFE was well represented at the spring meeting of the European Reference Network for Rare Bone Diseases (ERN BOND) in Bologna the first week of May. ERN BOND brings together 53 health care providers (hospitals) that deal with rare bone conditions. 40 people attended face to face and 13 online. In addition to several…
The OIFE Topical Meeting 2023 programme is now available to view and download on our website. This 2-day international conference is aimed at anyone with an interest in osteogenesis imperfecta and other rare bone diseases. The focus of the meeting is on pain and its impact. What is the meeting about? The 2023 OIFE Topical…
On February 8th a European Parliament event took place, hosted by Member of Parliament (MEP) Frédérique Ries and organised in collaboration with EURORDIS. The event was in the framework of Brussels Rare Disease Week 2023, to reflect on how the EU can ensure that more and better treatments are available, accessible and affordable for people…
REGISTRATION IS OPEN – EARLY BIRD DEADLINE JANUARY 31 Lack of understanding and poor management of pain severely impacts the quality of life of children and adults with OI. Under the title “Balancing life with OI” we are organising a topical meeting on the neglected subject of the causes, assessment and management of pain in…
